‘Not at the diagnosis point’: Dealing with contradiction in autism assessment teams

Abstract

Social science literature has documented how the concept of diagnosis can be seen as an interactive process, imbued with uncertainty and contradiction, which undermines a straightforward notion of diagnosis as a way to identify underlying biological problems that cause disease. We contribute to this body of work by examining the process of resolving contradiction in autism diagnosis for adults and adolescents. Autism is a useful case study as diagnosis can be a complex and protracted process due to the heterogeneity of symptoms and the necessity to interpret behaviours that may be ambiguous. We audio-recorded and transcribed 18 specialist clinical assessment meetings in four teams in England, covering 88 cases in two adult, one child and one adolescent (14+) setting. We undertook a qualitative analysis of discursive processes and narrative case-building structure utilised by clinicians to counteract contradiction.We identified a three-part interactional pattern which allows clinicians to forward evidence for and against a diagnosis, facilitates their collaborative decision-making process and enables them to build a plausible narrative which accounts for the diagnostic decision. Pragmatism was found to operate as a strategy to help assign diagnosis within a condition which, diagnostically, is permeated by uncertainty and contradiction. Resolution of contradiction from different aspects of the assessment serves to create a narratively-coherent, intelligible clinical entity that is autism.

Autistic adults’ perspectives and experiences of diagnostic assessments that include play across the lifespan

“…The findings imply that for these individuals, observations of play (such as via the ADOS) may be misleading for professionals. This is in line with literature demonstrating that masking is a diagnostic barrier for women or girls (Lockwood Estrin et al, 2021;Murphy et al, 2023), and supports research showing that professionals consider the ADOS to lack sensitivity when diagnosing autistic women or girls, because of masking (Hayes et al, 2021(Hayes et al, , 2022. We highlight that some autistic adults share similar views in relation to the use of play.…”

Tradução e adaptação do Toddler Autism Symptom Inventory (TASI®) para o português do Brasil

“…O diagnóstico do autismo pode ser complexo e tardio devido à heterogeneidade dos sintomas, a necessidade de interpretação de comportamentos que podem ser ambíguos, e a ausência de marcadores biológicos. Por isso o diagnóstico vem sendo feito baseado em critérios clínicos, às vezes com incertezas e contradições, e ocorre em média por volta dos 4 anos (Hayes et al, 2021;James;Smith, 2020;Lord et al, 2020;Pereira, 2007;Sillos al., 2020;Tamanaha;Perissinoto, 2019). Nesse cenário, a criação de novos instrumentos para auxílio diagnóstico torna-se imperativa.…”

Regulating diagnosis—Molecular and regulatory sub‐stratifications of lung cancer treatment

“…As Hayes et al. (2021) have shown in the case of autism, an individual can only be inside or outside a diagnostic category. In the case of the sub‐stratification of lung cancer patients, this binary is made possible through the dispersion of tasks and responsibilities between the professionals involved in settling on a diagnosis and treatment plan.…”